how much better am I supposed to get?

All of us have our own tolerances for what is ok and what is too much. For me, that level changes the longer I have the disease. It seems like we get adjusted slowly to less quality of life and therefore handle more. But, every person's threshold is equally important. You should strive to be as well as you can possibly be while feeling comfortable with the meds you are taking.

Most all of the meds have some serious side effects, including long-term use of steroids. Each time I start a new med I am afraid. (Just started Tysabri and tying to get over feeling like a walking time bomb.) But, as I get on the med, the ones that help, I start to feel like that drug is my friend. I hate being sick, no matter how accustomed to it and how it's integrated itself into my life. I strive for as close to 100% as possible.

Don't get down on yourself by comparing to others. It's ok to want to be better!

I'm so glad you asked this question! I've been wanting to know the same thing as I've been feeling the exact same way. I look forward to reading more responses.

I think we all understand your frustration to a point, map lady. I don't know if it's my personality, or my age, or my inexperience, but I will not settle for much less than 100%. I've had crohn's for about 3 years, and I've been on Remicade for most of that time. Prior to the remicade, I was at about the lowest of the low (40lbs underweight, joint pain so bad I had to be in a wheel chair, 20+ bms a day...fevers... the whole nine yards - for a year). I tried several things prior to the remicade, but none of them worked for me. Most of the other meds, like steroids, actually did very bad things for me. I'm aware that Remicade is kind of the top of the food chain when it comes to crohnie drugs, but I try not to spend too much time worrying about what I'll do if it stops working, and I remind myself to just enjoy life while it IS working. I guess what I'm saying is that I know how bad it can be, and how good it can be... and I strive and complain to my docs and demand solutions until I'm closer to the good side of the spectrum. Life is too short for me to do otherwise, in my opinion. Steroids are not a long-term solution for most people. Would your doc let you start something else BEFORE you stopped the steroids? Maybe you could sort of increase the new drug as you decrease the steroids, instead of just wiping one out of your system and starting another.

Best of luck to you, whatever you decide. You deserve to feel good. That's what you pay your doctors for, darn it.

Welcome to HW
I know you will really come to see and know the ppl here care about you and are here to help you with any questions they can
The support is awesome and so are the ppl on this forum
Hoping to see you post more and
STAY with us ..again...WELCOME

I am waiting to see about remicade right now ...I have the D so many times a day usually from 3 am til 5 am then again most of afternoon / am off the steroids for now ........I try to make sure I eat I have been down to 88 lbs and I will never go there again...OMG I was so sick .....I wish all well .....

 

LYN

I've been thinking the same thing too... I know I'm not one of the sickest people here - far from it! I haven't had an official diagnosis for very long and I only have one major flare under my belt but I'm getting fed up with medications, being sick and worrying about what to eat.
I sort of feel like I dealt with everything just fine before - without medications etc... And I wish I could just go back to how that was. The side effects of my current medications are so annoying and it doesn't seem like there are any other medications that will be any different :(

I hate being such a downer but I thought I'd post to let you know that there are other people feeling the same way.

All the best.

I just wanted to say you are not alone.  I have gone through periods of time when I would just wait to get home from the bus stop with my kids so that I could get into my PJ's.  When you find the right combo of meds, things should get better.  And keep in mind that new drugs are coming all the time, so if you "use up" all the current meds, you don't know what might be available at that point. I look at these meds and their long term side effects as a neccessary evil.  I am not guaranteed tomorrow much less 20 years from now, so if I have to take a medicine that might cause a side effect 15 years from now in order to have a good day today, thats a trade off I'm willing to take.

Have you had your blood work checked?  You might have some anemia issues or malabsorbtion going on.

But, I will tell you one med that has worked wonders for my constant D.  Xifaxan. It is an antibiotic used for travelers D, but it is used off label for CD.  I've been using it for almost 2 years.  I've gone from 15 - 20 trips to the bathroom a day to 4 - 6.  For me thats manageable. It has also allowed me to lower my prednisone dosage.  I've been on prednisone for most of the last 14 years and could never get below 15mg.  I am currently at 4mg and tapering 1mg every 6 weeks or so.  I have to go really slowly, or the withdrawly is horrible, but I'll take whatever I can get.

Broomhilda, I hope the fever turns out to be nothing serious.  Feel better soon!

Zanne, does the Xifaxan cause any unpleasant things like abdominal cramps or blurry vision and dizziness?  I have hycosciamine or however you spell it but I feel kinda dizzy and can barely read anything no matter what for about 1-2 hours whenever I take it, so I only use it when my symptoms are really killing me.  It's better than horrible abdominal cramps and pain like some other anti-D medicines I've tried but if that Xifaxan stuff has side effects that aren't as strong I'd totally love to try it :D

As far as whether I'm tired from stress/depression, no that's not it.  I do get that sometimes but as soon as I get away from whoever is bothering me and upsetting me (I live alone) I feel better or need to sleep and then feel better afterwards.  That's just a "man I could use a nap" or "I don't feel like doing anything" kind of tiredness, what I get from going to the bathroom so often is literally a level of tiredness where I am nodding off no matter what and sometimes it feels like I may have fainted for a second or so, I just suddenly lose all muscle control and my vision blacks out and then I find myself about to have a close encounter with the floor and manage to kinda catch myself and not hit the tile.  I will literally feel just fine until I go #2 the first time for the day and then immediately afterwards, like before I can get out of the bathroom, I feel like I'm going to either pass out or fall down and sleep and the more times I have to go #2 after that, the worse it gets.  Whenever I go #2 and it is not a violent emptying of my intestinal contents, I do not get tired or feel faint at all.  I guess I just have something weird wrong with me in that way.

I do not know what my B12 levels are, I would assume my GI checked that last time I was having problems that required prednisone about 4-5 weeks ago.  He said my blood tests came back "ok" but I do not know if it included a B12 test.  I keep meaning to ask if they have done that lately but I have had a hard time remembering things and now that I finally called it's the GI's day off...LOL.  Here's me being weird again though, I found that when I purposely keep myself starving and dehydrated I actually feel much better (not that I will feel awesome in that condition, obviously) than if I drink plenty of water, since it makes me run to the bathroom, and much better than if I eat anything, since off the prednisone I am not able to find anything that takes more than an hour to make my insides erupt.  The blandest safest stuff takes an hour to erupt, ordinary stuff can take as little as 10 minutes :(  The only reason I feel ok today is because I haven't eaten since 2pm yesterday and all I've had is about 10oz of water since then too.

So...yeah, I can't seem to do anything right to make my insides not angry and them being angry just kills my energy right away and gets worse the longer it continues.  The other reason I called the doctor was to ask for a medication change to the immunosuppressant type stuff in hopes that I can feel better.  I don't even care about the side effects since anything that could make me feel worse than I do without prednisone is very unlikely to happen, if one of those rare awful things happened at least I tried, I just hope one of them works and I do not "use them up" too quickly and not have anything left to use.

MapLady,

Xifaxan hasn't caused me any side effects that I know of.  It is an antibiotic used short term for travelers D, but off label for CD.  I had to get my insurance to approve it.  I think it is absorbed in the intestines, kind of like Entocort.  So the side effects would be minimized.  It isn't the same as the antispasmodics like Levsin and Bentyl (hycosymine). It may not be usefull for you, but it might be worth a conversation with you doctor or at least some research on your part.  It really has been great for me, and I don't ever want to live without it.

3 things I want to add though.  Don't assume your doctor is checking your B12 level.  Please follow up on this.  I know for me at least it wasn't part of my Doctors normal CBC and I had to keep asking to have it checked.  Also, it isn't good to go for long periods of time with no nutrition, or fluid for that matter.  Your body needs fuel to heal itself.  The more run down you get the harder it will be to come back up.  And lastly, I'm not a big supplement person, but for some reason a few years ago I started taking B6.  Not a combo B, but just B6.  200 mg, 2X a day.  It took about a month, but I did notice that I didn't NEED a nap every day.  I could still take a nap, but I didn't NEED it.

Please take care and keep us posted

Thanks Zanne about the Xifaxan, I'm probably not going to try it though because it's an antibiotic.  Before you posted about how it hasn't produced many side effects, I went and looked up the drug at mayo clinic's website and the other search result it provided was like psuedomembranous colitis or something, basically c.diff from being on antibiotics and the c.diff toxins giving you colitis.  It said sometimes Xifaxan is used to treat that but other times the antibiotic can cause that.  I think I'll pass just in case I ever need that antibiotic for E.coli or c.diff since those are difficult to treat.

Sorry Ivy, I can be kind of uh...hard to understand?  I can't think of the word.  I certainly don't want to leave my disease untreated but I was wondering if my relatively mild-seeming symptoms, aside from the debilitating fatigue, warranted using the big guns, or if I should just deal with it or perhaps hope to find a way to stop the violent intestine eruptions with drugs that aren't as crucial to have available for treating severe crohn's in case I ever suddenly get really bad.  Like I said, the side effects do not bother me that much for the immune suppressors, I just worry about using them up and running out of medications that work.  I am more afraid of the dumb prednisone since it's guaranteed to screw you up real bad and the only benefit I get from it is that I am able to function, lots of other things hurt instead and I worry about bone damage and eye damage and all that jazz, since all those things hurt and malfunction when on prednisone.

Today I noticed that I seem relatively ok with eating (bread and stuff stays in for 5+ hours) as long as I do not provide much water for stuff to mix with (water makes things gurgle and erupt within 1-2 hours) so...maybe I should try more anti-diarrhea medicines?  I have tried imodium (ouch) and the hycosymine (can't see) but if there's anything I can ask the doctor about that I haven't tried, that might be a good start, and would hopefully help right away as opposed to weeks of waiting for immune treatments to work.  If anyone has any anti-diarrhea medications they recommend that are not those two medicines, and not a steroid or antibiotic, that would be super.  Plus, my doctor doesn't want to give me the immunosuppressant stuff except as a last resort so I'm sure he'd give me an anti-diarrhea medicine right away and be glad to have me try it.

I hope I have some weird problem with absorbing water as opposed to having a crohn's attack somewhere inside that they can't seem to find unless I am bleeding and ulcerated.  My knees have been hurting badly lately, like they are full of water that gets squished and presses on them, so my crohn's is probably being bad but I am crossing my fingers that it's something else causing trouble at the moment.

Gah, that's not what I meant either.  I hate prednisone because it is guaranteed to screw you up real bad.  It makes me have pain in my bones and it screws up my eyes.  God knows what it would do if I had to stay on it longer.  The only benefit it has is that it makes me stop having to go all the time, which makes me able to function even though I feel pretty bad from the predisone instead.  It is a bad bad medicine and I do not want to take it forever.  At all, even, but it's the only thing that helps so far.

I have only had crohn's for 6 months.  I spent a whole month bleeding everywhere and barely being alive before I got any medication.  They actually thought I had some sort of cancer since it developed so badly so suddenly and did not go away.  Once they found it was crohn's I was on steroids for 2 months and have been on 4xLialda every day since.  Went a month without steroids.  Went on them another month, off them again for nearly 2 weeks now.  I have spent a lot of time on steroids since this started and that has been the only thing that makes my insides stay ok.

I do not know if my problem is with absorbing water but I noticed drinking water seems to make it worse.  I do not know if that is crohn's or not since after I initially went on medication they haven't been able to see any sign of crohn's activity any time I am having all these bathroom trips and fatigue.  I know crohn's never really goes away but I don't know why I am having all the bathroom trips and severe fatigue if all the crohn's testing is saying my crohn's isn't causing inflammation and stuff.  Sure, I feel miserable, but how do I know this isn't what I'm supposed to be like all the time from now on and then be worse when the crohn's is actually being active?  Aren't I technically in remission if all the tests are negative and scopes and biopsies are normal?  This is the main thing I do not understand.    

I do want to use an immunosuppressant.  I know they stop working after a while because they either stop being effective or hurt you more than they help you, and you can no longer use the drug after that and have to switch to another.  As far as I know there are only 4 immunosuppressants I can try since I can't use Remicade.  As last I talked with him my doctor will not put me on an immunosuppressant unless my crohn's shows up on some sort of test as being active again.  He's not picky.  Any test will do.  He tried a whole bunch of different tests because he wanted to find the answer but all the tests of every type were normal.  It just has not shown up on any test other than when I first developed the disease.  I can't blame him for wanting confirmation of crohn's activity returning, why end up with one or more important drugs in rejection when you can't even find anything wrong with your patient and those drugs may be needed more critically later on.  Does that make sense?  If there is anything that demonstrates that people whose crohn's won't show up on tests can have their symptoms improve on immunosuppressants, please point me at it and when I show the doctor it I should be able to try the immunosuppressants to see if they help.

Anyways I should hear back from them maybe tomorrow or on monday about whether or not I ever got B12 testing.  My GI seems like he is pretty knowledgeable about symptoms and side effects so I would be surprised if they say no I was not B12 tested last month.  He actually cares about making his patients feel better so I can easily get a B12 test if I need it and maybe he'll have ideas about what we can try to stop all the bathroom eruptions.  I know I am not out of options I just do not know what is making my insides so mad right now if my crohn's is supposedly taking a nap or whatever.   I am sure I will have more tests in general to go in for.  Hopefully all this business is not the new way my intestines will operate when I am in remission.  Really, really hope not.

Hi Map Lady

It took me at least 12 months to come to accept this disease and get used to taking the medication.  My Dr started me on steroids to give my system a kick start whilst the long term anti-inflammatories he gave me started to kick in.  He started the anti-inflammatories at huge doses which have now gradually been reduced and I now take two pills a day, which for my Dr is the minimum he likes people to take.

Before I completely stopped the steroids I was started on an immuno suppressant which is also long term and can do major organ damage if not checked regularly (weekly upon first use).  They have now developed a test to see if your body will react or not before they give you the drug.

I am in the UK and am not sure if the drug names are the same but my anti-inflammatory is called Mesalazine and the immuno-suppressant is Azathioprine, I think the test is called a TPMT test!

My view is that I take these drugs every day, which still really hacks me off, but I can get out of bed in the morning and the aching joints are heaps better.  I also take multi-vitamins as they could see my system was seriously lacking nutrients from my blood tests, that way even when I don't eat properly my system is getting something.  I did also find drinking water didn't do me any good, I used to drink cola by the bucket load.  This is now back to normal & thankfully I still have my teeth.